Days Snip Off Years From Sisters' Lives Woman Watches Illness Grab Hold Of 3 Daughters

GREENACRES CITY — As the months and years go by, Sheryl Horton's three young daughters will revert to the way they were as infants, then die.

The Horton girls, stricken with the same degenerative terminal illness, have a life expectancy of 12 to 14 years.

''They will die one at a time. I don't know if it will be hardest with Victoria or just as hard with each of them,'' Horton said.

In their baby pictures, Victoria, Christina and Annie seem healthy and alert. But their behavior and appearance betray signs of the disease's progress.

Victoria, 8, sat quietly or crawled around the floor, her atrophied legs and curled feet no longer able to support her barrel chest and semimobile arms. She is mentally retarded and rarely made a sound.

Christina, 5, is starting to grow out of the hyperactive phase that Victoria went through. She runs on tiptoes, constantly screeching or wailing. Also mentally retarded and slightly autistic, she likes to bang on things, which is why the windows are shuttered from the inside.

Annie, 3, looks normal with her soft blond hair and big blue eyes. But she stares listlessly and doesn't speak because of hearing difficulties.

It was not until March that Horton learned all three of her daughters have the disease. Victoria was the first to be diagnosed in October 1984. Tests on the others followed.

All three have Sanfilippo's syndrome, a genetic enzyme deficiency. The chances of being born with it are 1 in 150,000.

Both Horton and her ex-husband, George, carry the recessive gene that can cause the disease. For them the chances of having three children in a row with it were one in 64.

Horton, 26, manages to care for the girls and attend junior-college classes while drawing $1,308 a month in federal and state aid.

''She's an absolutely remarkable woman. I don't know of anyone who can take the strains of having three children with a terminal illness the way she does,'' said Dr. Jean Malecki, medical director of the Palm Beach County Health Department's Lake Worth Health Center, where the girls are treated.

George Horton, 31, also of Greenacres City, has been unable to pay child support because a construction injury two years ago prevents him from working, Horton said.

The couple met 10 years ago while she attended John I. Leonard High School, where she said she graduated 44th in a class of 400 and was student council president in her senior year.

Horton is working toward a degree at Palm Beach Junior College, with aspirations to go to the University of Miami. She wants to become a chemist when her years of caring for the girls are over.

''After a while, I learned to look at this as temporary,'' she said. ''I can take the second half of my life to recuperate from the first half.''

Her next-door neighbor, Mark Healy, said, ''Everyone I know is just amazed by Sheryl. My sister was visiting and she asked me, 'How does Sheryl do all that? And always with a cheerful smile?' ''

Horton said, ''I get my ups and downs like everyone else. I look at their baby pictures and get real depressed.''

She said her greatest regret is that one of the neurologists who examined Victoria earlier did not diagnose her condition as genetic. If she had known, she said, she would not have had more children.

The children go through $150 worth of diapers a month, keeping about the same changing schedule as toddlers. Only the youngest child still can feed herself. The eldest has lost the ability to raise her arms above her chest. The middle girl is too hyperactive to eat, even when she's hungry.

Most of the rooms are cordoned off with Dutch doors to keep the girls from hurting themselves. Asked how she thinks she has benefited from the experience, Horton responded quickly:

''I've learned to read minds real well. I can sense moods. Even over the phone. People are surprised when I say, 'What's wrong?'

''The girls can't tell me when they are thirsty or hungry or need a diaper change,'' Horton said.

''If I'm in the other room and Victoria falls and starts crying I have to guess where she's hurt by the way she holds herself.''

Horton said she heard of a woman in Iowa who adopted two abandoned children with the syndrome after one of her own was diagnosed with the disease.

''I have to give her credit. I don't think I'd like to take this on by choice,'' she said.